TJ's Journey: Built on Love

TJ's Journey: Built on Love We created this space to share TJ’s health journey with our friends, family, and community — the highs, the challenges, the milestones, and the moments of joy.

This page is dedicated to our amazing son, TJ- a brave, funny, construction-loving little boy who is living with a rare genetic condition called DEGS1, a type of leukodystrophy. Welcome to TJ’s Journey: Built on Love 💛

This page is dedicated to our amazing son, TJ — a brave, funny, construction-loving little boy who is living with a rare genetic condition called leukodystrophy. It’s a place where we can keep everyone updated, raise awareness about leukodystrophy, and most importantly, celebrate the strength and spirit that TJ shows every single day. He may be small, but he’s mighty — and just like the diggers and bulldozers he loves, TJ is moving mountains with love, support, and courage. Thank you for being here. 💛
Your love and encouragement help us build a foundation of hope — one day, one smile, and one post at a time.

Just scootin’ through the week! 🛴💛Even when the journey feels long and the waiting stretches on, we keep moving forward-...
11/06/2025

Just scootin’ through the week! 🛴💛
Even when the journey feels long and the waiting stretches on, we keep moving forward- one push, one smile, one joyful ride at a time. TJ’s reminding us that there’s always room for fun along the way!

🎳 Strike up some smiles! 🎳Today TJ had a fantastic time at Special Olympics Bowling with his school! Watching him shine ...
10/31/2025

🎳 Strike up some smiles! 🎳
Today TJ had a fantastic time at Special Olympics Bowling with his school! Watching him shine and celebrate with his family made the day even more special. 💙

We’re so proud of his determination, joy, and the way he continues to roll through life with courage and heart. 🫶

🌟 One Step Closer! 🌟Every call is another step closer to answered prayers. After one initial denial (that CHOP quickly a...
10/27/2025

🌟 One Step Closer! 🌟
Every call is another step closer to answered prayers. After one initial denial (that CHOP quickly appealed 🙌), we officially have insurance approval for TJ’s clinical drug!
The next step is securing approval for day treatment, where he’ll receive his first dose. We’re keeping our fingers crossed that things continue to move quickly—and in the right direction! 💙
Our hearts are full of hope as we look toward early November to begin this next chapter. Thank you for continuing to pray and believe alongside us—God is truly at work! 💪✨

10/18/2025

💫 “The best communities are built where everyone can join in on the fun.” Inclusion for the win! 💙 Statesville Country Club

Taking Life One Pitch at a Time ⚾️Tonight was TJ’s last game with the Yankees, and as always, he gave it his all! 💙Even ...
10/18/2025

Taking Life One Pitch at a Time ⚾️
Tonight was TJ’s last game with the Yankees, and as always, he gave it his all! 💙
Even when life throws a curveball, TJ shows us how to make the most of it- with determination, joy, and that unstoppable smile. Life with his disease brings ups and downs, but TJ continues to knock it out of the park, one pitch at a time💪

💃🏻🕺🏼Dancing with Joy! 💙We’re dancing with joy today! TJ’s medical team has reached a consensus on his drug trial dosage!...
10/16/2025

💃🏻🕺🏼Dancing with Joy! 💙
We’re dancing with joy today! TJ’s medical team has reached a consensus on his drug trial dosage! 🙌 This means we’re officially moving forward with the next steps: scheduling and submitting everything to insurance.

Each milestone in this journey brings us closer to hope- and today, we celebrate this incredible progress with thankful hearts and joyful moves (just like TJ dancing with one of his favorite helpers at school!). 💫

We are so grateful for every prayer and bit of encouragement along the way. The road is long, but hope is alive and moving - one step (and dance!) at a time. 💙

Children's Hospital of Philadelphia Molly Grantham

Another great night under the lights with the Miracle League! ⚾💙TJ had a blast playing baseball with his Yankees teammat...
10/04/2025

Another great night under the lights with the Miracle League! ⚾💙
TJ had a blast playing baseball with his Yankees teammates, and the night was made extra special when his favorite principal, Mrs. Ribbeck, came to cheer him on! What a joy to see so much support surrounding TJ both on and off the field. 💛

Still waiting patiently (and sometimes not so patiently 😉) for news about TJ’s drug trial. But in the meantime… we’re no...
10/02/2025

Still waiting patiently (and sometimes not so patiently 😉) for news about TJ’s drug trial. But in the meantime… we’re not letting fear creep in! 👻🦴
This 20-foot skeleton may look spooky, but we know God’s plan is nothing to be afraid of. We’re standing firm in faith, trusting His timing, and celebrating each joyful day while we wait💛

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